Prayers and info PLEASE!!

[GotGarlic]

Originally Posted by DawnT

GG, I've been to INSN site. Nephrologist is the one who said that the late date of onset and discovery of disease in Jim is what will cause the expectancy to be 8-10 years. In the 4 years that we have been dealing with this his kidneys have gone from 65% to 20%. We have to have our 3 children and our grandkids checked for this as they are not sure if it is hereditary or what. I don't want a kidney found because he will last longer on dialysis!

I hope this doesn't come across as arguing with you, Dawn I know what it's like to have a serious, chronic illness and I don't want to upset you by sounding like a know-it-all But the first link I sent before also says this: "...while that of a patient on dialysis is only 5.84 years."

I also know from experience that the caregiver of a person with a serious, chronic illness is walking a difficult road. Especially when a primary symptom is fatigue and the person can't be a helpmate as he or she was before, it can be frustrating and just difficult to get through. I hope you have people in your life who can help *you* have time to do the things you enjoy and just have people you trust who you can talk to when you need to. Best wishes to you and your husband.

[JoAnn L.]

DawnT, sending thoughts and prayers for your DH and a hug for you.

[DawnT]

TG.,GG.,JL., Thank you. GG, you don't sound arguementive. I know I need to have someone outside my head right now and you may just be elected!!! I'm just so frustrated, waiting for the dialysis counselor to get back to us (out sick w/flu), waiting for 2nd opinion on any other options out there. I want to kick and scream and cry but I know that will only make my face wet and my clothes soggy!! Jim just got insurance at the beginning of the month, how long will he be able to work... All these questions are going through my mind. ARRRGGG!!!

[Fisher's Mom]

I'm so sorry to hear this Dawn. End Stage Renal Disease is very frightening for everyone concerned. Not only are you dealing with the failure of hubby's kidneys but it seems everything in your life must change.

First off, you need to get in touch with the dietitian associated with the hospital where your hubby's nephrologist practices. They are full of exactly the information you need. You will not only get a detailed reduced/low protein renal diet, but a huge packet of recipes and ways to make substitutions in your favorite recipes as well. There may be other things that would be good for your husband to limit or eliminate in order to maximize his kidney function like phosphorous, sodium and other things. Again, the dietitian will become one of your best friends in this area.

The other thing is not to be afraid of a transplant until you have more information. The statistics you quoted include all kidney transplants - related donor, living donor, cadaver donor. One of the most common is a cadaver donor and those are not always a particularly good tissue match. Sometimes because of other health issues, an organ may be transplanted that isn't an optimal match because there is no other choice. Depending upon your husband's situation, other health issues, available organs, etc., his particular transplant may carry a much longer average "lifespan".

Also there are 2 basic types of dialysis, which are very different and are accomplished differently. Bilby and Kadesma have a lot of first hand knowledge about this. While it is lifesaving treatment, it can be very hard on the body long term. Again, much depends upon your hubby's other health issues. There are people who do very well on dialysis and actually choose not to seek transplant immediately. But others can really only survive dialysis for a limited time and need to be transplanted ASAP. So you will need to be open to whatever is the best course of treatment for your husband.

So learn all you can, ask lots of questions, and look to family and friends for emotional support through this. There are a lot of people here who care and are here to listen and help. Keep us up on this, Dawn.

[Barbara L]

You said that the doctor said to limit his protein, but that you found on the web that he shouldn't eat any at all. If you don't trust the doctor, maybe he should get a second opinion from another doctor. The advice to see a nutritionist is good too, as well as much of the other advice you received here. Have you looked to see if there are any online groups concerning this disease? There are a lot of groups, such as at yahoo, that deal with diseases. Discussing it with people who are going through the same thing sometimes helps.

I found this site, which has some diet advice: National Kidney Foundation: A to Z Health Guide Item

I am praying for Jim, as well as for you, since this affects you both.

Barbara

[kadesma]

Yes you need to limit protein NOW, but when he is put on dialysis all will change..I'm on dialysis which is done at home..While on hemodialysis done at a center by nurses I was told to eat at the very least 6 oz. of protein a day, I have to do that now as well, you body needs it has to have it on dialysis..I also have to take a med to keep the phosphorus levels down, watch potassium and most patients on dialysis have to limit fluids and foods that are considered fluids like jello, ice cream or anything that melts... Don't be afraid of transplant, I have a friend who has had his donated kidney 20 years..Getting a kidney takes a long time at times so go through the typeing and all that is needed, if needed do the dialysis there are several types, I am doing mine at home it is call pd and has the option of a machine to use at night a cycler which I will be training for soon..Good luck, and remember fight all the way to get the best that you can..and do take someone with you armed with all the questions that come to mind. Start now, jot them down when they come..You will make it..I am..
kadesma

[Bilby]

Dawn - so sorry to hear about your husband. I would listen to the nephrologist over and above anything you read on the web. He will need protein. He needs a balanced diet still for health and the key to him remaining healthy is to eat healthy as well as excercise. Ignore the averages. It doesn't help. Just depresses. They take into consideration people who opt for conservative treatment (ie no real dialysis at all) as well as pd and hd. They also have people who die very quickly. There is something like a 5% death rate post transplant in the first year - and let me tell you now that it is a nervous year! But it also considers people who have had transplants for decades. I was really lucky in my first month of kidney failure to have met someone who had hers for about thirty years - one of the first done successfully in Perth. Her side effects were terrible but she was alive and living a full life. Don't forget also that you can sometimes get a second transplant. That's what I'm hoping for when this kidney fails - I don't want to be dead in a few years!!!!

I have done haemo, cpd, apd and had a transplant. Once I adjusted to hd, I loved it. Hated cpd and apd. Love the new kidney!!!!! I'll pm you my email address if you want to ask me anything although it will be different for your husband to me and will differ from the US to Oz. But I will share anything I can with you that you want to know.

[DawnT]

Thank you Fisher's Mom, Barbara L, Kadesma & Bilby. I know I'm raving, it's just so overwhelming at this point. I try to set up app'ts only to be told they will be months away, or the person is sick. I know they are human too, but right now...AAAAAAA!!!! Jim plans on the home dialysis- doesn't want to have any of his time wasted sitting around. As if!! I have to strap him down as it is to eat!!! Thanks again you guys. You are the best friends a crazy lady could have!!! I love you. ;>) Dawn

[Fisher's Mom]

No, no, you are not raving, Dawn. You sound very intelligent and logical woman who has just found out her husband's illness has progressed. I would be very frustrated if I couldn't get the information I needed to care for the person I share my life with!!!! I'm just sorry you are having to wait because I think when they finally get you hooked up with the right people, you will at least understand exactly what needs to be done. Again, keep posting about how things are going.

And I forgot to mention that they will assign you a social worker who will be primarily be helping you with the insurance side of this. It used to be that people diagnosed with End Stage Renal Disease were automatically covered under a "Catastrophic Illness" government administered program like Medicare or Medicaid. I'm sure things have changed but perhaps Kadesma can tell you more about this.

[DawnT]

Well I do have good news, I don't have to worry about my cholesterol!! I just got my results back and I wet from 253 total ch in June to 188 total ch. LDL went from 189 to 122, HDL stayed at 51, Tris are 76. Thank God, one thing I don't need to think about!!! I am doing the happy dance, to bad you guys can't see. Maybe it's a good thing since I thin I have 2 left feet!!